THE PATIENT PROFILE – A NURSING TOOL FOR CHILDREN WITH DISABILITIES

Touzel, B A

Royal Children’s Hospital, Melbourne, Australia

 

Objective: Children with severe disabilities commonly have no effective form of communication and are totally dependent on their families and others for all aspects of their self-care. As a result of complaints from parents, carers and community groups at Melbourne’s Royal Children’s Hospital lack of communication was indentified as a major problem hindering the delivery of quality health care to these children. In response, the "Patient Profile" was developed to create an effective communication tool for use by nursing staff and other health care team members.

Development: Parents and daily care providers have learnt the best way to meet the child’s everyday care needs. Normally this experience is lost when the child is admitted to hospital and cared for by many different people.  In developing the Profile, the parents and day-to-day carers were regarded as the “teachers” in conveying the needs and information in a way that could be sustained despite changing staff and circumstances over time as the child's care progresses or the child is readmitted to hospital. It has developed from its initial purpose to address the needs of children with severe cerebral palsy to being used in the care of a broad range of disabilities and by the wider health care team. The Profile has also evolved to encompass advances in medical treatment and to support the increasing integration of children with disabilities into the community.

Results: The Profile has become an accepted tool at the Hospital in the nursing care of children with severe disabilities. It has been integrated into the relevant clinical pathways and communication-related complaints have decreased significantly.  A community group has also used the Profile as the basis for a commercially available tool for children with disabilities.

 
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